Day 12: Post-Op in ICU

This blog post is copy-and-pasted from our CaringBridge account (https://www.caringbridge.org/visit/thomaslauer) and published in retrospect.

November 29, 2020, written by Mama

Sunday was a hard day for Thomas. The atmosphere here is so unpredictable: Sometimes hours or even an entire 12-hour shift goes by and it is peaceful, positively boring. Then things can change rapidly such that the ocean waves are crashing against us over and over.

On Saturday evening, Thomas had finally started trying to talk and he mouthed and then actually said audibly "Daddy" and "Mama." I cried tears of joy! (Darling 16-second video here: https://www.youtube.com/watch?v=MjJXXTJVewo&feature=youtu.be) Thomas's upper GI bleeding seemed to be stabilizing and slowing such that on Sunday morning the whole team even agreed to try NG nutrition today (very slow at 5 ml/hour). But after morning rounds, rising, rising, rising were Tom's heart rate (up to the 170s) and blood pressure (up to 180s over 100s), and his temperature rose, too. They can't give him fever-reducing medications, so we had to take off my baby's gown and blow a fan on him with the room AC on max. What unnerved me was that Thomas stopped communicating to me at all. My mother's intuition was badly shaken and I called in various attending doctors to ask them to look at the situation. I felt like a pacing caged tiger.

It was around 2:30 p.m. and the first NG formula was being prepared when Thomas began vomiting frank blood in "massive quantities" (for once, a nurse using big language, not just this mama using big language). He vomited multiple times, covered the bed, vomited up one clot the size of an apricot.

Ultimately over about two hours, he lost about 250 mL of blood via vomiting and NG tube (everything gets counted in a hospital!), although they couldn't count what soaked into the bedding.  I looked up the typical blood volume of a 40-pound child and I believe Thomas lost about 20% of his volume. God have mercy on him.

After the intensity calmed but before the sanguineous scene was cleaned up, Thomas used all his strength to whisper his loudest to me, "Mama, I want to go home." The sword pierces my heart. I promised to him that I would stay with him while the doctors help him to get strong.

Thomas needed a new, larger NG tube placed (size 14) to accommodate better drainage of blood (which clots, unlike stomach contents). This means my awake child had to go through that procedure again. His nurse really went to bat for him and searched the hospital high and low to find a special lidocaine gel which is not normally kept on the PICU floor, as well as giving him a dose of morphine. Thomas was amazing for the procedure.

Then the IV lady came again to create a new access point for him using ultrasound to guide her needle. The nurse said, "The way things are going, we need more access."

CBC labs taken three hours after the most intense bleeding showed that his red blood count crashed down to 5.3 and his hematocrit to 17, so they are running back to back transfusions of units of packed red blood cells. Thomas has been put back on high-flow oxygen instead of his low-flow canula until his red blood cells are higher because he was desaturating. (High-flow oxygen is a little tube-mask on his face, similar to a CPAP machine, but not invasive like intubation.)

Amidst all of this during the afternoon, Thomas's dose of methadone ended up being two hours late because, as we learned, there is a national backorder on this critical medication. Again, one of Thomas's nurse was very defensive of him and got in everybody's face (in a professional way), including getting management, until the pharmacy sent up the methadone, which both Thomas and one other little boy on the floor need right now.

Thomas's blood pressure is so unstable that they did not want to give him BP-reducing meds, but they finally did and now we are relieved that his HR is down in the 140s and BP down around 150s/70s. Both of those numbers are still totally high for a five-year-old boy, but they are so much improved.

Now we are approaching shift change and I have no idea what the night will hold. Only God knows these things and I beg for fortitude to continue being Thomas's smiling face and reassuring caress while watching what he is enduring. The larger NG tube is working better, but that also means I sit here watching Thomas's blood flow out of him through the clear tube into the collection jar while he is receiving replacement blood flowing into him via the IV and, of course, all of this blood is flowing through the continuous dialysis machine. The GI team may very well schedule an endoscopy (which they wanted to avoid because it can cause damage, as well) to see the source of bleeding and try to stop it with more than the two medications he has been receiving for it.

St. Januarius and St. Philomena, patron saints of bleeding disorders, pray for us!

Chilly little Thomas watched some quiet Mr. Rogers with Mama.

John participated in the Turkey Cup and not only did he personally score 6 goals over the many games, but his team one the entire playoffs! Congrats, John!